Markings: Boundaries and Borders in Dementia Care Units

AbstractThis visual essay discusses material markings in a nursing home and the boundaries and borders negotiated by them. Based on participant observations made through in-situ drawings in three d...


Introduction
This is an essay about markings in a dementia care setting. My inquiry into this topic began with an encounter several months into my fieldwork in a nursing home. Admittedly, I had seen markings before, but I had not thought much of them. In this setting, they seemed both commonplace and indisputable. However, there was something about this particular encounter that I found disconcerting and it led to questions about markings and their consequences.
Dementia is a medical term denoting a syndrome involving longterm and gradual decrease of cognitive abilities (Daroff et al. 2012(Daroff et al. , 1534. It has been argued that the predominant biomedical discourse concerning dementia as a progressive brain disorder affects how persons with dementia diseases are approached and perceived by themselves and others (Dupuis, Wiersma, and Loiselle 2012). In response to this, several researchers argue that it is crucial to understand personhood as enacted and embodied, because this facilitates more constructive interactions with people who have dementia diseases (Hyd en 2014; Kontos, Miller, and Kontos 2017;Phinney and Chesla 2003). As Moser (2010, 278) writes, daily life with dementia is not about curing a disease but about finding ways to make each day as good as possible. In line with this, some researchers, explicitly or implicitly, begin to draw attention to materiality in dementia care (Buse and Twigg 2018;Cleeve, Borell, and Rosenberg 2019;Hyd en 2014;Saunders et al. 2012). For instance, Hyd en has described how the particular set up of objects such as cutting boards, knives, and brussels sprouts can facilitate collaboration between staff and people with dementia when preparing a meal. Buse and Twigg (2018) have pointed to how clothing and handbags play roles in maintaining a sense of self for those with dementia. This aligns with the growing scholarship concerning "materialities of care", which calls attention to everyday material things within various care practices as something that sheds light on important, but often neglected, interactions (Buse, Martin, and Nettleton 2018;Cleeve, Borell, and Rosenberg 2019;Cleeve et al. 2018;Latimer 2018;Mol, Moser, and Pols 2010). In this essay, I use the term "materialities" to refer to that which is tangibleincluding bodies, objects, and physical placesavoiding definitive distinctions between the human and non-human. This definition is influenced by Karen Barad's (2007) argument that meaning and matter are inextricably intertwined and that boundaries of various matters (e.g. what constitutes a body or an object) are not fixed but, instead, their meaning and properties emerge from the phenomena of which they are a part.
Although scholars have begun to address materialities in dementia care, this topic remains relatively unexplored. Aware of this I conducted an ethnographic study to explore everyday materialities in dementia care units. The study was designed as part of a larger interdisciplinary research effort concerning environments in nursing homes. While the study generated several insights about everyday materialities, this essay is focused specifically on markings. A marking can be understood as a material imprint of some sort but also as the act of materially delineating something. Markings can be seen as essential to how boundaries and borders are brought into being. Moreover, borders and boundaries can be clarified through markings. A boundary is the outer perimeter of something and may hinder movement from outside to inside (Figure 1a), or from inside to outside ( Figure 1b). A border (Figure 2) then, can be thought of as the dividing line between things, for example two countries. Borders can take on various material forms and practices (Keshavarz and Snodgrass 2018), and some are configured so that they are only recognized by a few people (Johnson et al. 2011, 68). The regulated movement resulting from borders and boundaries are crucial to understanding our history and societies (Netz 2004). While I am concerned with the reciprocity between markings, boundaries, and borders, I hope to open it up for study rather than promptly defining this relationship.
The aim of this essay is to explore material markings in the everyday lives of residents in dementia care units. Through selected examples, I will analyze how markings negotiate certain boundaries and borders, and what consequences that may bring.

Methodology
I conducted participatory observations in three dementia care units in a nursing home. 1 The nursing home comprised twenty-three units with eight to nine residents living in each unit. The residents lived in private rooms that came unfurnished, except for a bed and a bedside table. The common areas in each unit included a kitchen, a living room, and a balcony. From September to November 2017 and October 2018 to February 2019, I visited the home one to two times per week for about three hours at a time. I used the emerging literature concerning "materialities of care" as a sensitizing concept (Gunn, Otto, and Smith 2013), reminding me that seemingly trivial materialities can shed light on neglected, but important, situations. During my visits, I spent time with the residents and took part in their everyday lives. While doing so, I made in-situ drawings using a sketchbook and a pencil. Nursing home residents typically have quite varied capabilities, which calls for inclusive and considerate research methods. In order to enable persons with a dementia disease to participate in research, Bartlett (2012) asserts that research practices must be adapted. Drawing offers certain possibilities here. As the artist and author John Berger (2005, 3) writes, a drawn line is not only important because of what it records, but of what it leads you to see. In ethnographic work, drawing encourages looking at things carefully, noting what you otherwise might not (Kuschnir 2016, 122). Despite drawing being essential in early anthropology, recent visual anthropology has primarily been focused on photography and film (Kuschnir 2016). Yet, drawing is not necessarily replaceable with   Design and Culture other methods. According to Berger (2005, 70), a drawing encompasses time, whereas a photograph arrests time. Taussig (2009, 269) explains drawing as immersive, allowing for a mute conversation with what is drawn and Kuschnir (2016, 125) points out that, in fieldwork, drawing is often perceived as less invasive than photography.
My ambition in drawing in-situ was to capture situations and interactions as they occurred, which meant that I drew in a quick, rather than detailed, manner. The resulting abstraction opened a space for interpretation for persons looking at the drawing. A selection of drawings were shown in workshops with the units' staff members; two in the late fall of 2017 and two in the early spring of 2019. In these workshops (which were audio-recorded), a fellow researcher and I showed a group of six to eight staff members one drawing at a time. The drawings elicited diverse interpretations, which prompted discussions about everyday life in the units. To my surprise, staff members were often able to describe situations in great detail from quite simple line drawings. Verbal communication and recollection can be challenging for people with dementia, and I did not use drawings in workshops with the residents. I nevertheless had many insightful verbal and non-verbal moments with residents (and family members) in relation to the drawings. Essentially, drawing in this context made me attuned to what people did rather than what they said.
Informed by Hammersley and Atkinson (2007), my analysis was ongoing and progressively focused. Initial analysis took place after each visit, as I reviewed drawings and wrote about each depicted situation along with my reflections and questions. This provided direction for my subsequent visits at the units, which I regularly discussed with my research group. The analytical focus on markings provided one such direction and I also re-read earlier fieldnotes and reviewed drawings in light of this. During fieldwork, I made a total of 694 drawings depicting various aspects of everyday life in the units. I scanned and arranged the drawings chronologically in relation to the fieldnotes. The examples of markings were organized into different patterns as a way to think with and through my data (Hammersley and Atkinson 2007, 168).The analysis presented in this essay is based primarily on data from the participant observations, with workshop discussions adding perspectives and nuance to my findings.

Sorting out the Other
Some markings in the nursing home were made for the residents, by other people. This designated differences and distinguished one person from another, and also distinguished one thing from another. In other words, these markings were attempts to "sort things out".
October 8, 2018 I am standing in the passage between the kitchen and the corridor. I see Solveig in the kitchen, looking out on the balcony and the flowers on it.
Solveig was one of the first residents that I had the opportunity to spend time with in the nursing home. I have talked with her many times since then. But I have never seen her like this. Borders can separate different people, things, and places from one another (Khosravi 2010, Green 2012). In the nursing home, Solveig's handbag was distinguished by what the marking said, but also by the marking itself, as other residents' handbags were not marked in this way. Borders are not given, but contingent on historical and cultural repetitions of performing a border as a border (Green, 2012;Johnson et al., 2011). Similarly, Barad (2007, 158) asserts that no definite boundaries exist; rather, they depend on social practices. She exemplifies this through the phenomena of a "disabled body", writing that "'able-bodiedness' is not a natural state of being but a specific form of embodiment that is co-constituted through the boundary-making practices that distinguish 'able-bodied' from 'disabled'". Hence, the uncertainty of boundaries becomes especially clear when a body "breaks down". It makes sense, then, that dementia (one example of how the body can "break down") challenges boundaries. Moser (2011, 714) writes that dementia presents itself as a growing mismatch between a person and her environment and that dementia is "not so much [ … ] an objective and object-like condition internal to the individual brain, as a problem with relation, interaction and communication". The marking on the handbag can be seen as an attempt by the daughter to maintain and care for Solveig's material boundaries as she could not do this herself.
Yet, the marking implied something else too: a sense of despair or, perhaps, brutality? When I showed the drawing at a workshop, staff members said that it made Solveig seem incompetent and someone made associations to prisons. Here, what is usually considered private becomes a public matter. Khosravi (2010, 82) notes that "brutality flourishes where the private and public are indistinguishable". To illustrate this, I leap to two different contexts; not to say that these examples are similar to the nursing home, but rather to exemplify how everyday things can transform boundaries. The first example is Dilnot's (2015) analysis of the memorial "Places of Remembrance" in Berlin, consisting of about eighty signs hung on lampposts. The signs feature illustrations of everyday artifacts on one side, and extracts from the decrees applied to Jewish people in the years 1933-1942 on the other side. One sign shows a necklace with a text declaring that, as of February 21, 1939, jewelry belonging to Jewish people should be handed over to the State. Another sign shows a loaf of bread, announcing Jewish people may only buy food between four and five o'clock in the afternoon. By gradually regulating the objects with which people lived, persecution was intertwined with daily life, effectively segregating the Jewish population. Hamlett and Hoskins' (2013) study on dress regimes in an English asylum between the years 1830 and 1914 draws attention to how uncomfortable and ill-fitting clothing became a constant bodily reminder to its wearers that they were poor and deemed mentally ill. Even glasses, wedding rings, and dentures were considered "unsafe" and taken away.
While the decrees were designed to deliberately discriminate against Jewish people, the asylum clothing was intended to maintain safety and help patients. Yet, both examples showcase how everyday matters participated in reconfiguring certain individuals as "others". That which is engaged with frequently bears a subtle force on identity and agency. This is why there can be brutality in seemingly trivial material boundaries, even if they are intended as a form of care. This dynamic between care and brutality appears similar to Maggie Nelson's (2011, 267) understanding of love and cruelty as coexisting, in which the transformation from one into the other is always alive. When Solveig carried the handbag, she was marked as someone who did not know her handbag, yet others could conclude that the handbag was in fact hers. In this way, the marking assumed the relation between Solveig and her handbag. The word "assumed" is important, because we do not know what their relationship was like (or even if there was one), but the marking enabled others to make assumptions about this. To mark a handbag with Solveig's name reinforced a boundary that appeared given, but that may not have been clear to Solveig herself. Hence, the marking became an effort to maintain a status quo at the expense of excluding Solveig from having a constitutive role in relation to "her" handbag. The possible ways in which the marking interfered with perceptions of Solveig and what she was (in)capable of, illustrate how seemingly petty material reconfigurations have ethical consequences. In the words of Barad (2007, 396), "a delicate tissue of ethicality runs through the marrow of being. There is no getting away from ethicsmattering is an integral part of the ontology of the world in its dynamic presencing".
October 29, 2018 On Agnes' walker there is, what appears to be, a blue bathrobe belt.
I ask her about it: "Perhaps I have used it to tie something to the walker?
Or maybe it just makes it easier for me to recognize it, to set it apart from the other walkers?
You know, they tend to look alike … " Agnes shows me the patient bracelet that is attached to the walker. It has her name written on it but she tells me that it is too small for her to read.
As Agnes pointed out, the walkers in the units were similar and I noted that a majority of them were marked with residents' names. Thus, having a marked walker did not label a resident in the way that a marked handbag did.
Staff members explained that, while they would sometimes mark things for residents, this was typically done by family members. As a result, the markings differed. While Agnes could not see what was written on her walker, some residents were able to read their markings. For example, after lunch one day, Stig said that he was going for a walk and took ahold of a walker. He read his name out loud from the rather large piece of tape on the walker, before concluding that it was, in fact, his. It is important how visible a border is, and to whom it is made visible. Visibility and invisibility operate along a continuum. A border might be sensed, but not so visible that it facilitates navigation of the border. In these examples, both Stig and Agnes were aware that there were markings on the walkers, but only Stig was able to clearly see the marking.
Borders do not only differentiate and separate, but they also facilitate connections. The markings could be seen as examples of what Moser (2011, 715) describes as a person with dementia being "held in relation and allowed to experience participation and connection". Through the markings, Stig and Agnes were held in relation to their walkers and to a practice of walking. Furthermore, as Netz (2004) notes, borders, through their ability to both separate and connect, regulate the movements of materialities. In these examples, it did so in (at least) two ways. First, the markings connected the walkers to Agnes and Stig, respectively, preventing the walkers from being moved too far from them. Secondly, a person using a walker is most likely dependent on it for support when moving from one place to another. In this way, the walker itself regulates movement. If the marking on the walker is not legible to the resident (as in Agnes' case), this obstructs the movement of that person. The marking thereby regulates how independently a person can walk from the living room to a bathroom, for example. Sometimes, when I momentarily forget the name of a resident, I find myself glancing at their glasses.
Glasses are particular. They are usually made for a particular set of eyes and eyesight. For the wearer, glasses are the difference between seeing and not seeing something well. When glasses are worn, they visually mediate the world. For the near-sighted, the marked glasses are paradoxical: you would need to wear the glasses to be able to see what is written on them. This made it difficult for residents to escape the markings imposed by the glasses. This also tells us something about for whom the markings were made and how they reinforced a boundary between other people and residents, designating the former as able and the latter as unable.
The markings on Solveig's, Greta's (GS) and Ines' glasses suggested that these items were regularly misplaced or lost. To lose or misplace things is often considered a warning sign of dementia (McGarrigle et al. 2019;Hamilton, Fay, and Rockwood 2009). However, as most people at times misplace or lose things, it is difficult to conclude that a particular instance of something being lost is a result of a dementia disease (Hamilton, Fay, and Rockwood 2009). In a study conducted with staff at two Dutch nursing homes, it was concluded that a wide range of things went missing, not only residents' belongings (Oude Weernink et al. 2017). They noted several different reasons for this, including visitors, the portability of things, shared assets between units, and the lack of storage. The markings on the glasses underlined misplaced glasses as a personal, rather than structural or shared, problem. Even when the glasses were worn and not lost, the marking cautioned that this person was likely to lose their glasses. Missing things can cause distress, and it has been reported that care workers spend a considerable amount of time looking for misplaced items, which is viewed as a disruption and distraction to care (Hamilton, Fay, and Rockwood 2009;Oude Weernink et al. 2017). I argue that strategies (such as markings) used to prevent items from being lost, and to enable them to be retrieved, is not separate from care, but is an aspect of care.
Later in my fieldwork, another resident, Birgit, asked me to help her find her glasses. As I located her glasses and brought them back to her, I saw that her name was printed on a sticker, placed inside the eyeglass temples. When Birgit wore the glasses, the marking could not be seen. The question of care in relation to markings is not about markings per se (or even about marking glasses, or walkers, or handbags), but about how markings, along with other materialities, participate in realizing certain agencies and identities over others.

Orientating Oneself
Some things in the nursing home were marked by the residents themselves. These markings appeared essential to how residents orientated themselves in this setting.

October 29, 2018
Agnes and I are sitting in her room when there is a knock on the door. A staff member peeks her head inside and says that she is there to make the bed. When she is finished, she bends down to pick up a newspaper from the floor under the bed.

Agnes interrupts her:
That's my rug! It's a bit slippery of course. But it's better than nothing. The floor is so cold … In institutional settings where life is limited, seemingly trivial things can take on unexpected value. Agnes making her own rug from a newspaper says something about the importance for Agnes to have something between her feet and the cold floor. In nursing homes, rugs are often discouraged because they can increase the risk of slipping and falling. The importance of safety in care settings might seem indisputable, but to prioritize safety in all situations has been critiqued, as it can override other, equally important things (Latimer 2018, 384). Documents, in this case about fall prevention (Skog 2008), categorize materialities in the nursing home in concrete ways. This is in line with Hull (2012), who argues that documents are not just instruments of organizations but constitutive of the organization itself, shaping subjectivities, objects, and knowledge practices. According to Ahmed (2006), materialities are shaped by the ways they are orientated to one another. On a societal level, such orientations create norms and conventions, or "lines" (Ahmed 2006, 15). The recommendation against rugs, implemented in many nursing homes, can be understood as collective recognizable line. Agnes' newspaper on the floor can be viewed as a deviation from that line: creating an alternative mode of being that is notably fragile. If Agnes had not been in her room when the staff member had walked in to make her bed, it is likely that her rug would have been mistaken for a newspaper and possibly taken away.
Anna has made a place at the table by the window in the common area.
Whenever she gets up to leave, she carefully arranges her things on the table.

Markings: Boundaries and Borders in Dementia Care Units
Design and Culture The rooms (even those that were "private") to which the residents had access in the nursing home were more-or-less shared with other people. To sit in a certain spot or to do certain activities has been noted as a strategy used by persons living in nursing homes to create their own environment in response to the strong surveillance culture (McColgan 2005). While I noted that residents would sometimes get annoyed when someone claimed a certain space in a common area, this stance could be understood as a way to orientate oneself. Ahmed (2006) writes that moving homes for her is about inhabitance, about extending herself and her body in new spaces. The process of inhabitance means that perceived boundaries disintegrate: through sitting, sleeping, and writing in various rooms, Ahmed (2006, 11) notes that the rooms, as well as her body, cease to be distinct. Thus, to inhabit space in a common area suggests that some boundaries disappear while borders are simultaneously created. Anna and Ester claimed "their" spaces in the units. They occupied space and orientated themselves in the rooms through their bodies, but also through glasses, napkins, newspapers, and pens. Through the activities in which they engaged, borders were created between them and the rest of the room. It is an example of how, as Green (2012, 579) argues, borders are not fixed objects but, rather, ongoing activities and relationships. What this suggests is that borders are in flux, and while materialities sometimes mark a personal space, they can be reconfigured and a fellow resident can be invited, as seen in the example of Ester sharing her newspaper with Birgit.
However, there were also examples in my notes about residents feeling estranged and, in a sense, homeless.

October 19, 2018
It is around ten o'clock in the morning. Frida, Ines, and I are sitting around the kitchen table. We are having a cup of coffee.

Supported by her walker, Eva walks into the kitchen:
Ines is quick to reply: Eva seems relieved, saying that she thinks that she recognizes Ines too. We invite her to sit down at the table and have a cup of coffee with us.
Scholars researching institutional settings for eldercare often advocate that nursing homes should be home-like, allowing for a sense of home (Falk et al. 2013;Norberg, Ternestedt, and Lundman 2017). In this literature, home is thought of as something positive. Yet, as many scholars (feminists in particular) have pointed out, homes can also be sites of oppression and exploitation (Rose 1993), creating a sense of exclusion, rather than inclusion (Khosravi 2010, 95). Khosravi argues that homelessness enables genuine hospitality because it allows people to look at each other, beyond territorial belonging; that is, when we do not feel that we belong to a certain place, we are more prone to recognize and accept another person. Dementia can involve problems with orientation in time and space. For someone with a dementia disease, it might be difficult to remember what happened half an hour ago, or to recall if one should turn left or right when leaving the kitchen in order to go to one's room. I noted that if a staff member was present in such moments, s/he often helped the resident to orientate themselves. But I also witnessed how residents would help each other. Eva walking into the kitchen was one such example. There is value in how a person with a dementia disease can recognize that the person next to them might share a similar sense of disorientation and of homelessness. They may not always be able to help each other to the extent that a staff member can, but it is possible that this lessens feelings of isolation. As Khosravi (2010, 96) insists, homelessness "opens the door to accepting the other as she is, not as how we want her to be".

September 29, 2017
Lunch is just finished and apple sauce with milk is served in porcelain bowls. Solveig says that she thinks it is too sour and too cold. She lifts the placemat underneath the bowl, accidentally knocking over the glass of water in front of her. The water drips onto the table and into Solveig's lap. Anna, who sits next to her, is quick to hand Solveig a napkin. Several other residents begin to clean the table too.

November 14, 2017
At a workshop with staff members working in the unit, I showed this drawing. I asked them what they saw in it.
The staff members assumed that the drawing depicted a resident being helped by a staff member. Perhaps this says something about how the staff perceived residents. It might also provide insight into the implications of framing everyday activities as tasks in professional care (Latimer 2018, 385). In a previous study, my colleagues and I analyzed how nursing assistants in a dementia care unit understood materialities in their work (Cleeve, Borell, and Rosenberg 2019). Our analysis suggested that the organization and structure of care reinforced the understanding of material things as instruments for conducting particular tasks. Simultaneously, little attention and time space was allocated to how nursing assistants understood materialities in relation to specific situations and residents. Handing someone a napkin is a small gesture exemplifying how residents cared for one another and how markings could be elusive. A napkin or a newspaper can mark a place, but also a relationship. This adds to Mol, Moser and Pols' (2010) argument that, in care, the material is not fixed or easy to control, but need continuous adjustment and reflection.

Concluding Remarks
In this essay I have analyzed, through a series of examples, how markings negotiated boundaries and borders in the everyday lives of residents in a nursing home. Everyday life is often characterized as trivial and mundane, in which things are engaged with on such a routine basis that they seem almost invisible (Ingold 2012, 429). Yet, what is to be considered mundane is not self-evident. What something "is" relies on cultural and historical repetition, emerging through specific practices (Barad, 2007,157). My conclusions align with and contribute to the work of other researchers who argue that what some may consider mundane has concrete and far-reaching consequences in institutional settings for persons with dementia diseases (Boelsma et al. 2014;Buse and Twigg 2018;Mondaca et al. 2018). This is why the everyday can be so important and meaningful in this context, andif treated carelesslybrutal.
Based on participant observations and in-situ drawings in dementia care units, I have presented two different kinds of markings. The first type of marking involved other people writing the names of residents on things as a way to distinguish these. This was done for the residents and can be seen as a way to categorize materialities into fixed relations. The second kind of marking involved residents reconfiguring material things in various situations to make space for themselves and/or other residents. The first type of marking suggests that materialities can be thought of as separate entities that can be defined, which is in line with scholars who argue that there are various types of materialities that are inherently different (Ingold 2012;Jansen 2013). However, my analysis indicates that the boundaries of a person and, say, a handbag or a pair of glasses were not always clear.
Markings made by the residents themselves appeared less obvious, as they relied on ongoing practices that evolved and fluctuated over time. Still, Agnes placing her newspaper on the cold floor as a rug can be seen as an exercise of agency, improving her situation and of claiming space. It can also be seen as an opposition to the institution in which she found herself. Agnes' capacity to act took shape through the relationships between different materialities. As Barad (2007) argues, agency is relational and emerges through specific material practices. In this way, ethics is inextricably intertwined with materiality. Accordingly, it is crucial to recognize how boundaries and borders rely on material practices. Through practices, some things come to matter while others are excluded from mattering. As we participate in these boundary-making processes, we have a responsibility towards what is excluded (Barad, 2007). Ostensibly mundane markings configured the residents' lives by reinforcing the material boundaries and borders that reified understandings of the residents and what they could do. In other words, markings participated in practices that actualized how residents mattered and/or how they were excluded from mattering. It is thus worth asking which markings matter, how they matter, and for whom. Answers to such questions cannot be presumed but have to be formulated in relation to specific situations and materialities. What follows is that even seemingly trivial markings require ongoing ethical responsiveness. Note 1. Ethical approval was granted from the Regional Ethical Review Board in Stockholm, Sweden (#2015/512-31/5, addendum 2017/1735-32). Staff members and family members were informed about this study verbally, as well as through posters in the units. Staff members participating in workshops were given verbal and written information at the time of each workshop. I informed residents about my work continually. When they showed an understanding and interest, I interpreted this as them giving their consent to participate. I was attentive to whenever someone expressed discomfort towards me, so as not to intrude.